This blog is about my 8 year old son Joey and our journey into diagnosing his PDD-NOS and Epilepsy, learning from it and helping others, as well as being a great place to store all the information I gather along the way.

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Monday, November 17, 2008

Another book I picked up is The Autism Answer Book, by William Stillman. I will be adding my highlighted sections from the book here so that people can share in what I'm reading, especially those near and dear to Joey and how it pertains to him.

What is Autism?pg.2 ~ "(Autism) has been used to describe individuals who appear to be self-contained or who exist in their own little world, an inner realm seemingly set apart from others. ~ Autism is a common neurological anomaly that may preclude the body from properly receiving signals transmitted by the brain, resulting in misfires and disconnects. ~ Those who are Autistic are inherently gentle and exquisitely sensitive."

Sunday, November 9, 2008

I am reading The Out of Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz. I picked it up yesterday and have already learned so much. I will be posting some important information from the book here. Joey has not been diagnosed with this disorder by many children with ASD also have issues with SPD.

Does Your Child Have Sensory Processing Disorder?pg.32 ~ "Another component of Autism - and a very important one - is difficulty with sensory modulation, sensory discrimination, motor planning, and sequencing. Problems with sensations are sometimes overlooked or downplayed but are among the main areas of impairment." pg.33 ~ "That most people with Austim have some degree of SPD is a recognized fact. Understanding how sensory and motor problems complicate the child's daily life is crucial for designing an appropriate intervention program. Parents must ensure that their child's treatment program includes ample sensory-motor experiences and an individualized sensory diet.

My mom and I took Joey to see Madagascar 2 on opening day. I've been looking forward to this day since I heard they were making a sequel over a year and a half ago. My mom wanted to go because Madagascar is one of the 1st movies she and Joey enjoyed together and it has become one of their favorites.

We had a rough morning that day so I probably should have cancelled going to the movies but I didn't want to disappoint my mom. Even though she pushed to have Joey diagnosed, she doesn't quite grasp what his diagnosis means and how his needs to come before everyone else's.

Joey fell asleep on the way to the movie but woke up when we got there. He seemed very excited about the movie until it started. The noise was unbearable. His hands immediately went up over his ears and he looked like he was in pain, yet when I asked him, he didn't wanted to leave. I ran out to the manager to ask if they could lower the volume and they did. I enjoy going to the movies, but even I felt that it was too loud for my ears. Loud noises do bother Joey but he has never been bothered in a movie theatre before, even at this location.

Joey seemed better after the volume was lowered and the hands slowly came down. He enjoyed his pretzel and some of my popcorn and we had a good time. The ears got covered again a little over halfway through but he still didn't want to leave. He was in awe of seeing his favorite characters on the big screen.

The Autism Society of America - Greater Phoenix Chapter offers Sensory Friendly Films which is only at one movie theatre in Phoenix and one in Mesa, with one showtime on the 1st Saturday of every month (of course, I work on Saturdays). They show the selected film with lights turned up and the sound turned down so that children affected by Autism Spectrum Disorders can enjoy the film in a setting just for them. What I would like to see is more movie theatres offering this or for all theatres showing children's movies to just lower the volume! With 1 in 150 kids affected by Autism and many other children affected by other disorders like Sensory Processing Disorder, the vast majority of children would benefit from having the volume turned down.

Sometimes, when I choose not to think about it, I forget that Joey has issues to deal with. Sometimes I get a little reminder. Over the last few days, I've had a few of them.

It started with seeing my therapist for the first time in a few months. My first thought was telling her about Joey's diagnosis. We had limited time and I wanted to get her thoughts on play therapy and possibly a referral to another therapist in her clinic. She then hit me with something I wasn't ready for. "How are you dealing with this?" "I'm fine" is always my answer. This is not about me, it's about Joey. But, of course, she soon reminded me of what I've read before: that there is a certain amount of grieving that needs to be done when your child is diagnosed with something and you realize that their life's path will be greatly altered. Maybe it's something I haven't been ready to face. Maybe it's something I can only take in small doses.

The next day was our usual speech appointment with Rosie. I picked up Joey from preschool and took him to his 4 year check up at the pediatrician. He did great, especially because he already had his shots. I wanted to reward him for how well he's been doing so we went to Wal-Mart to pick up a Lego set before we met with Rosie. Bad move on my part. We headed home and the struggle began to get him to focus. I put him in time out to see if I could get him to focus but that didn't work. Instead, he locked himself in his room and couldn't get himself out. It is events like this that just make me want to cry. I can't help my son and I feel like a total failure as a mother. It happens, Rosie assured me, but does she really understand Joey? Half the time, I don't think I do...but I'm trying.

After Rosie left, Joey was fine. All he wanted to do was be home and play with his new Lego set. This is why I blame myself for messing up his speech therapy appointment. I should have known better. So many things need to be analyzed and considered in Joey's day. I sometimes wonder what it's like to just BE.